“One bad day is not a bad lifetime and you’re not alone.”– Sharon

Get tips from others living with narcolepsy. Sign Up Now »

Get tips from others living with narcolepsy. Sign up now »

Finding Your Support Network

You are not alone.

Having others you can turn to is important for navigating the challenges that come with living with narcolepsy. Hearing first-hand experiences from other people in the narcolepsy community can help with managing your symptoms, talking to family and friends about narcolepsy, and building a functional and meaningful life.

See how others with narcolepsy have found support
  • Find the right sleep specialist. – Scott
  • Connect with people who have been diagnosed, either online or in person. – Sharon
  • Having narcolepsy can leave you feeling self-conscious in the workplace. Strategic disclosure was better than allowing someone the opportunity to label me. – Ijeoma
  • Being open and honest with your friends and family is incredibly important. – Emily
  • Surround yourself with people who bring you peace. – Gina
  • Find a counselor who you can speak candidly with. – Matt
Emily support system for people living with narcolepsy video thumbnail
Watch Video
Sharon finding your narcolepsy support group video thumbnail
Watch Video
Emily support system for people living with narcolepsy video thumbnail

Support System for People Living With Narcolepsy

Sharon finding your narcolepsy support group video thumbnail

Finding Your Narcolepsy Support Group

Support System for People Living With Narcolepsy

Emily

Emily shares the importance of having a support system and who she includes in hers.

Finding Your Narcolepsy Support Group

Sharon

Finding your support group may take time, but be patient and remember that you are not alone.

Living with narcolepsy today allows for so much more connectivity than at any time in the past.

Matt

Emily support system for people living with narcolepsy video thumbnail
Watch Video

Support System for People Living With Narcolepsy

Emily

Emily shares the importance of having a support system and who she includes in hers.

More

Living with narcolepsy today allows for so much more connectivity than at any time in the past.

Matt

Sharon finding your narcolepsy support group video thumbnail
Watch Video

Finding Your Narcolepsy Support Group

Sharon

Finding your support group may take time, but be patient and remember that you are not alone.

More

Connect With the Narcolepsy Community

There are several groups and organizations that can provide information, support, and more to people living with narcolepsy and their loved ones.

Narcolepsy Network logo

Narcolepsy Network

Founded in 1986, Narcolepsy Network is a member-led community organization that works to educate, empower, and connect people impacted by narcolepsy.

Through the lens of advocacy, education, awareness, and support, Narcolepsy Network delivers programs and resources in the form of clinical updates and research, webinars, support groups, and advocacy opportunities. Narcolepsy Network also hosts an annual conference offering up-to-date information on clinical research, therapies, and lifestyle hacks, as well as networking and support.

Click here to learn more about Narcolepsy Network.

Click here to join Narcolepsy Network's email list.

Click here to register for one of Narcolepsy Network's virtual support groups.

More

Wakeup Narcolepsy logo

Wake Up Narcolepsy

Wake Up Narcolepsy is a 501(c)(3) not-for-profit organization that seeks to raise narcolepsy awareness, bringing direction to the search for a cure while providing a strong community of support to patients and caregivers.

WUN offers free, targeted online support groups to individuals with narcolepsy and their families worldwide. Their programs are designed to bring together individuals who have been affected by the diagnosis of narcolepsy and provide the support and community necessary to thrive. Find a weekly online support group. Find a weekly online support group.

There are several other resources and events supported by WUN, including education day videos and webinars, podcasts, fundraisers, and awareness campaigns. Check out all the supportive resources WUN offers.

More

Project Sleep Logo

Project Sleep

Project Sleep is an organization raising awareness about sleep health and sleep conditions, including programming to empower and support people with narcolepsy.

Project Sleep’s Rising Voices program helps foster a new generation of patient-advocates by encouraging people to share their personal stories to improve public understanding of sleep disorders. Discover how to get involved.

World Narcolepsy Day (WND), occurring every year on September 22, is dedicated to raising awareness of narcolepsy on a global scale, uniting the international narcolepsy community to inspire action, increase public knowledge, and elevate the voices of the 3 million people living with narcolepsy worldwide. Learn more here.

Project Sleep also hosts the Narcolepsy Nerd Alert series, where fellow #NarcolepsyNerds can explore aspects of the narcolepsy experience, contemplate bold questions, and learn from each other. Live broadcasts happen on the last Wednesday of every month. Check out videos and toolkits from Narcolepsy Nerd Alert.

More

Day4NAPS

A platform with a mission to raise narcolepsy awareness by sharing stories of people living with narcolepsy and fundraising events happening worldwide. Get inspired and find ideas for your own narcolepsy awareness events.

Cloud download icon

Support for people living with narcolepsy is available.

Get resources »
Open book icon

Check out videos and stories from others in the narcolepsy community.

Discover »
Connect With Know Narcolepsy on Social Media:
YouTube logoFacebook iconInstagram

Vivid dream-like experiences that occur while falling asleep or while waking up.

Occurs at night and includes dreams; muscles are not active to prevent people from acting out dreams.

People with type 1 narcolepsy can be diagnosed by their cataplexy or low levels of hypocretin (also known as orexin).

The cause of type 2 narcolepsy is unknown.

Restorative sleep state with decreased muscle tone.

Daytime and evening habits to improve sleep.

Brief total loss of voluntary muscle control when falling asleep or while waking up.

Also known as orexin, hypocretin is a naturally occurring chemical in the brain that helps maintain wakefulness and prevent non-REM sleep and REM sleep from occurring at the wrong time.

Unintentionally falling asleep due to excessive daytime sleepiness; “sleep attacks.”

The inability to stay awake and alert during the day; a constant need for sleep or unintentionally falling asleep.

A naturally occurring chemical in the brain that helps maintain wakefulness.

Vivid dream-like experiences that occur while falling asleep or while waking up.

Frequent shifts between different states of sleep and wakefulness at night.

Difficulty focusing or concentrating.

Brief loss of muscle tone with retained awareness, often triggered by strong emotions.

Performance of routine tasks without awareness or memory.